Calling all triple negative breast cancer patients in the UK
Comments
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Hello BernieEllen
Thank you so much for giving us a good laugh.The weather here in Exmouth has been wet and miserable for the past two days. It has been pouring down with rain all day and it does affect your mood. In addition to the bad weather, there is nothing very cheerful about the news, which is all doom and gloom.
Wishing you all the very best.
Sylvia xxxx0 -
Hi ladies,
I got my path report today, two days earlier than expected and I'm so thrilled to say that it's great news. The tumor was gone & there was complete regression in the lymph nodes. They said there was a smidgen of DCIS but that was taken with breast. The Dr. told me they all gave a great cheer when they saw the report. I was told to go home and celebrate! My wound has healed really well aside from a small part that they are keeping an eye one. They removed dressing and put a small dressing on the unhealed area and I have to go back next wk as they want to keep an eye on it but it's not infected. Today is a very good day and I thank God for every minute of it!!
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Hello beachmd
Thank you for your post.There are different chemotherapy drugs to treat breast cancer, but they do not all do the same thing. That is why a combination of different drugs are chosen. You need to talk this over with your oncologist. From my experience the oncologist will look at your case and then tell you what chemotherapy drugs he/she has chosen for you. You are quite at liberty to ask why particular drugs have been chosen. I remember very clearly that I made an appointment to see my oncologist before deciding on my chemotherapy and she told me the drugs that I would be having. She told me that they would be cyclophosphamide (Cytoxan), epirubicin (Ellence) and docetaxel (Taxotere). She further explained that I would have the cyclophosphamide and epirubicin together, intravenously, every three weeks for the first three months. After that I would have the docetaxel, on its own, every three weeks for three months.
Cyclophosphamide and epirubicin are very common chemotherapy drugs in the treatment of breast cancer.
Docetaxel was one of the newer drugs at the time in 2005 and belongs to the group of drugs known as taxanes.
Sometimes doxorubicin (Adriamycin) which belongs to the same group as epirubicin may be used.
Sometimes paclitaxel (Taxol) which belongs to the same group as docetaxel may be used.
I did ask my oncologist why she had chosen docetaxel instead of paclitaxel and she said it was less harsh on the heart.
Cyclophosphamide is known as an alkylating agent and two of its side effects are hair loss, and suppress the immune system.
Docetaxel and paclitaxel are known as antimitotics and can cause the same side effects as the alkylating agents.
Doxorubicin and epirubicin are known as topoisomerase inhibitors and also have the same side effects as alkylating agents. Doxorubicin can cause heart dameage.
Although these chemotherapy drugs have similar side effects, they work in different ways.
I know from reading some of the posts on these threads that other women have had different combinations. For example, some may have had three combinations known as FEC (fluorouracil, epirubicin and cyclophosphamide) and then paclitaxel or docetaxel.
As you see from FernMF's post, she had docetaxel (Taxotere) and cyclophosphamide (Cytoxan). Her oncologist decided not to give her a third one because of its problems with the heart muscle.
Your oncologist will decide what she thinks is best for you.
Some women have different time-scales and may have weekly treatment instead of every three weeks.
Your oncologist should also tell you what the likely side effects will be. Although we have more or less the same drugs, we all react differently and we all have different side effects. For example, I never had any sign of nausea or vomiting. I was not affected by the steroids. My main problem was feeling more tired than usual.
I would think that the most common side effect is hair loss and that happens pretty quickly after the first treatment. To get through chemotherapy you need to take special care of yourself, drink plenty of water after treatment and throughout treatment, get plenty of rest and eat as healthily as you can in small doses.
You will find that you can get through chemotherapy, even though it is very time consuming, and you will not necessarily have some of the nasty side effects that other women experience. I took no pills during treatment other than the ones given at the oncology clinic for the three days after each treatment.
If you feel nauseous, natural products such as peppermint tea, ginger tea or ginger root cut up in hot water can help. Canned pineapple in its own juice can refresh a dry mouth. If you have a problem there is always a way to overcome it.
Before you start your chemotherapy, at least this was my experience, you will have an appointment with chemotherapy staff who will talk to you and check certain things, such as blood pressure.
Before you start your chemotherapy you will be weighed and checked for height, because the amount of drug you receive depends on these two things. Before each treatment you will have had a blood test to make sure that everything is in order before you get the chemotherapy drug. Levels of red and white blood cells are especially important.
I hope this information helps.
Best wishes
Sylvia0 -
Hello FernMF
I am glad to know that all continues to go well. Keep it up.Best wishes
Sylvia0 -
Hello Mumtobe
I am sure I speak for everyone when I say that it is wonderful news that you have such a good pathology report. You can now look ahead for the birth of your baby.Thrilled for you. Best wishes.
Sylvia0 -
Hello again
I just wanted to say, especially for those newly diagnosed and having to face chemotherapy, that you can wear an ice cap on your head during treatment if you feel you cannot face up to having temporary hair loss. My oncologist was against it in 2005 when I asked about it. She said she was concerned about the risk of infection. Women do have these ice caps however. It is not only loss of hair on the head but you also loose bodily hair, and often eye-lashes and eye-brows, but you can get through all this.
Wishing everyone well.
Sylvia
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Thank you all for your answers . I feel comfort talking to the Uk girls, hope I can stay! I was reading about the cold caps and wonder of you know of any cancer center in USA using them. Also does anyone from UK know of any approved drugs or treatments for triple neg that isn't allow here in US. Thanks all
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Hello beachmd
I am so glad to know that we could help you and that you are finding comfort in talking to us here in the UK. Of course you can stay with us. This thread is to help anyone going through a diagnosis of breast cancer.It would be useful if we could know where you are with your treatment, which normally consists of surgery, chemotherapy and radiotherapy. Quite often chemotherapy can take place before surgery, in order to shrink a tumour if it is large. I saw from one of your posts that you had DCIS in the past and were not happy with your treatment.
If you have been newly diagnosed you probably have a thousand thoughts running through your brain and probably feel afraid and concerned. Please be reassured that, like the rest of us, you can get through this treatment. You need to sit quietly and think through your options, and then take one step at a time. If you are to have surgery first, then I would think your first decision is to decide whether to have a lumpectomy or a mastectomy. I would think that the choice between these would come as a suggestion from your oncologist, breast cancer consultant/surgeon or jointly from both of them. It is up to you to decide. It seems that in the UK women with small tumours and stage 1 breast cancer tend to have lumpectomies followed by radiotherapy. I have two acquaintances who have gone that route here in Exmouth. One of them had a lumpectomy where the surgeon was not satisfied with the margins and so she had a second lot of surgery and that was successful. She then had radiotherapy. The other acquaintance had one straightforward lumpectomy, followed by radiotherapy. They are both well five years on for one and two years for the other. They did not have TNBC.
Women on this thread know that I am in favour of mastectomies, as I feel more reassured that everything has been removed, but that is entirely my personal choice.
You need to get this sorted with your medical team which I presume you must have, since you have been diagnosed.
If you are going to have chemotherapy first, I would think that in the US cancer centres would be offering cold caps if patients are asking for them.
As for chemotherapy drugs, I would not think that anything being used in the UK is banned in the US. We have given you the main drugs that are used for primary cancer. There are a group of other chemotherapy drugs known as platins, such as cisplatin, but I do not know if they are used for primary breast cancers.
It would be helpful to know what your diagnosis is. Do you have DCIS or do you have the very common breast cancer, invasive ductal carcinoma (affects about 85% of women) or some other type of breast cancer? What are your receptors? Are they oestrogen positive or negative, progesterone positive or negative, and HER2 positive or negative? What stage are you (1, 2, 3 or 4)? What grade are you? Most TNBCs are grade 3. Are any of your lymph nodes affected? What is the size of your tumour?
In considering your treatment, all of these factors will be taken into consideration.
Do not be afraid of surgery, chemotherapy or radiotherapy. None of this treatment is what any of us would have wished, but you can get through it. Yes, there are side effects, but in the meantime the treatment gets rid of our cancers and keeps us alive. What may happen many years later has to be put to the back of our minds so that we can live in the present.
We are all thinking of you and our presence on the threads shows that you can do this.
I am assuming, since you are in the US with its insurance based health system, that your treatment will be looked at and approved by your insurance.
Wishing you well and hoping you can give more details so that we can support and comfort you.
Sylvia
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Hello to all. Things not too bad here. Looks like I have truncal lymphedema so back to the hospital.
Weather miserable.
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Hello BernieEllen
Thanks for popping in. I am sure we are all sorry to hear that you are having trouble with truncal lymphoedema and I do hope that at the hospital they will be able to resolve it quickly and effectively. Is it causing you a lot of pain? We all know that lymphoedema in the arm can happen after surgery, either straight-away or after a long time. I understand that with truncal lymphoedema the arm is not necessarily affected.There is a good and easy to read website about truncal lymphoedema, which you might like to read, if you have not already read it, as I know you like to be informed. The website is very recent and is as follows:
http://www.lymphnotes.com/article.php/id/461/
It could be useful to all of us because there is information about bras and what to wear and what not to wear. There is also information about wearing a lightweight prosthesis if you have had a mastectomy.
I do sympathise with the miserable weather you are having. It is the same here. We have had torrential rain for most of this week and more to come tomorrow and Friday. It is damp and depressing. There has not been a hint of sunshine all week. Are you taking vitamin D supplements. They are so important during the autumn and winter here.
Are you still keeping busy? Have you read any good books lately?
I have found that the long dark evenings and gloomy days have been dampening my spirits lately.
Thank goodness we have your jokes, Bernie.
Wishing you all the best and please let us know how you get on.
Sylvia xxxx0 -
Hello Dulcie
Just popping in to say that I am wondering how things are going. Please PM me if you feel the need.Best wishes
Sylvia xxxx0 -
Thanks Sylvia. . . I've been near normal since the weekend . . . still quite weak in the "long muscles" on my legs . . . if I sit in one place for two long I'm like a REALLY old lady getting out of a chair . . . have a bit of acid-y stomach - things taste real funny - - but I am THANKING GOD this has been as "easy" as it has been compared to what I hear on this site from others . . .
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Thanks for the info Sylvia, I hadn't seen that. I also have circulation problems in my legs, may all be connected.
I will let you know how things work out.
Bernie xx
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Hi Sylvia,
Do you have any good recipes for cooking Tofu? I'm gonna give it a shot! Went grocery shopping earlier and was annoyed at how little organic ingredients were stocked (in Dunnes for our Irish ladies). Some days you could go there and the organic produce is plentiful and then other days it's non existent. Found the fresh soya milk too
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Hello FernMF
I was so glad to know that everything has been near normal for you since the weekend. You have done so well. Things can only get better and I know that you are doing everything in your power to get yourself better and back to 'normal'. Give yourself time for your body and your immune system to get back to proper functioning. You might want to try some canned pineapple in its own juice to refresh your mouth. Juiced fresh pineapple or juiced avocado is also refreshing, not to mention water melon and other melons.Keep up the good work.
Best wishes
Sylvia xxxx0 -
Hello Bernie
I was glad to know that the information was useful. I hope everything will get sorted out for you. I hope you will get the circulation problems in your legs sorted out.What a lot of health problems seem to follow after cancer treatment, but there is not much we can do about it. The treatment is the price we have paid to stay alive. I know you are a strong person and you have a sense of humour on your side, which is such an asset. Let us know how you get on.
Thinking of you. Best wishes.
Sylvia xxxx0 -
Hello Mumtobe
Thank you for your post. I was interested to know that your supermarket is called Dunnes. Here in the UK the big names are Tesco, Sainsbury, Asda, Morrisons and Waitrose. Here in Exmouth we just have Tesco. It is quite difficult finding organic products and they seem to disappear. At our Tesco they have quite a lot of fresh soy milk, but I buy only the unsweetened. It amazes me how the food industry keeps adulterating everything and cannot keep anything simple. From cartons of fresh unsweetened soy milk they have now gone to sweetened and all kinds of cartons full of sugar and water and no soy milk, just junk!! I do manage to buy some organic fruit and vegetables but it tends to be quite expensive, so I also buy local non-organic produce.You asked about tofu. It is something I buy, from time to time, but it is quite challenging to use. You do need to mix it with something, as it is very bland on its own. You could blend some of it with soy milk and some fruit, such as blueberries or raspberries. If you want to cook it I would think the best thing is to blend it with some vegetables, spices and herbs, in a stir fry and serve it on a bed of wholegrain brown basmati rice or wholegrain couscous. You could heat up some olive oil, fry some red chopped onions, some peppers, chopped root ginger, chopped mushrooms and some tomatoes and mix the tofu in with all this. If you like turmeric (very anti-cancer), that gives flavour. If you eat cold water prawns, these also go well in a stir-fry.
I hope this gives you some ideas. I do not know your taste in food and you have to consider your husband. I do not use a cookery book. I just invent things and always try to make nutritious food.
Take care. Best wishes.
Sylvia xxxx0 -
Hello everyone
Another week is nearly over and I hope that it has not been too bad for you. It continues to rain here, is very overcast and is very depressing. It is strangely mild, but so damp. It is typical flu weather!There have been questions lately about chemotherapy and what drugs to have. I found an interesting site that shows most of the drugs used in breast cancer of whatever kind and the various combinations. I thought it would be useful information to post, especially because it shows the generic names and the brand names, and this can be confusing, especially to the newly diagnosed. For example, docetaxel is generic, Taxotere is the brand name.
http://www.cancer.net/cancer-types/breast-cancer-metaplastic/treatment
Although this has metaplastic in the link, it is because I was looking up to find out whether there specific drugs for this type of breast cancer and discovered that there are not and that it is treated with the same drugs as other types of breast cancer.
I think it is important to have everything to do with chemotherapy clear in your mind as it takes up the major part of standard breast cancer treatment.
Best wishes to everyone.
Sylvia0 -
A farmer is sitting in the neighborhood bar getting soused. A man comes in and asks the farmer, "Hey, why are you sitting here on this beautiful day getting drunk?"
"Some things you just can't explain," the farmer replies.
"So what happened that is so horrible?" the man inquires.
"Well if you must know, today I was sitting by my cow milking her," the farmer begins. "Just as I got the bucket about full, she took her left leg and kicked it over."
"That's not so bad, what's the big deal?" the man asks.
"Some things you just can't explain," the farmer says.
"So then what happened?" the man asks.
"I took her left leg and tied it to the post on the left with some rope," the farmer continues. "Then I sat down and continued to milk her. Just as I got the bucket about full she took her right leg and kicked it over."
"Again?" the man asks.
"Something's ya just can't explain," the farmer repeats.
"So, what did you do then?" the man asks.
"I took her right leg and tied it to the post on the right," the farmer explains.
"So then what did you do?" the man asks.
"I sat back down and continued to milk her, and just as I got the bucket just about full, the stupid cow knocks over the bucket with her tail," the farmer says.
"Wow you must have been pretty upset!" the man says.
"Some things you just can't explain," the farmer says again.
"So then what did you do?" the man asks.
"Well I didn't have any more rope, so I took off my belt and tied her tail to the rafter," the farmer says. "In that moment, my pants fell down and my wife walked in. Like I said, some things you just can't explain."0 -
Hi Sylvia,
Back for a week now and just about recovered. We had a good trip and saw some great places, Ashville, Gatlinsburg, Nashville and a horse farm in Lexington owned by a guy who left here 30 years ago.The last week was spent with sister in law so that was family time. We visited Mount Vernon which is built on a fabulous site overlooking the Potomac river.
We got news whilst waiting for our flight home in Boston airport that my B in Law had been taken into a hospice and he is very low at the moment, so sadly it is just a waiting game whilst praying for peace of mind for him.
I have returned to the pain specialist and the first injections didnt work so I am scheduled for more. I do feel that the cold and damp weather that we get in this part of the world contributes to the aching burning feelings.
BernieEllen, I have my next appt with the lymphadema nurse next wednesday. I am not sure is mine truncal. I have it in a 3inch band at the top of my arm and in my breast. She wanted me to try a compression bra but it cost over 100 euros and was very nylony. I have to wear things with high cotton content because of skin condition on my breast. She does do a massage which is helpful and soothing.
I was so interested in the new research into breast cancer especially TN. It was in the papers in the US whilst we were there and on TV because of the presenter Robin? [Im terrible with names] She had TN and was in hospital for a bone marrow transplant, I think perhaps leading from her original treatment.
On Saturday we have another oncology consultant coming to the centre and this time I have printed off the link so that I can go through it and come up with a concise and relevant question that cannot be side stepped. The question of the link to ovarian cancer and the possibility of testing for TN affected women. I know that the centre will be packed so I must sit up at the front!
I also heard this week that more and more people are having their appeals for invalidity turned down. It is very frustrating trying to find someone who will speak up for cancer survivors and the irrelevance of the criteria for invalidity relating to cancer and its after effects.
sending peaceful and healing thoughts to all especially those in treatment and also anyone new. This thread is a godsend x
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Hello everyone
I was just reading the past few threads and was surprised to find that the list of chemotherapy drugs that I thought I had posted along with a link, was not on that post, so I am posting it again.Chemotherapy
Chemotherapy is the use of drugs to kill cancer cells. Systemic chemotherapy is delivered through the bloodstream, targeting cancer cells throughout the body. Chemotherapy is given by a medical oncologist, a doctor who specializes in treating cancer with medication. Most people with breast cancer receive chemotherapy in their doctor's office or outpatient clinic. An adjuvant chemotherapy regimen consists of a specific treatment schedule of drugs given at repeating intervals for a specific number of times.
Chemotherapy may be given intravenously (injected into a vein) or occasionally orally (by mouth), and is usually given in cycles. Chemotherapy may be given before surgery to both shrink a large tumor and reduce the risk of recurrence or adjuvant therapy given after surgery to reduce the risk of recurrence. Chemotherapy is also commonly given at the time of a metastatic breast cancer recurrence. Patients in clinical trials may be offered new drugs or new combinations of existing drugs.
Different drugs are useful for different types of cancer, and research has shown that combinations of certain drugs are sometimes more effective than individual ones. The following drugs or combinations of drugs may be used as adjuvant therapy to treat breast cancer:
•Cyclophosphamide (Cytoxan)
•Methotrexate (multiple brand names)
•Fluorouracil (5-FU, Adrucil)
•Doxorubicin (Adriamycin)
•Epirubicin (Ellence)
•Paclitaxel (Taxol)
•Docetaxel (Taxotere)
•CMF (cyclophosphamide, methotrexate, and 5-FU)
•CAF (cyclophosphamide, doxorubicin, and 5-FU)
•CEF (cyclophosphamide, epirubicin, and 5-FU)
•EC (epirubicin and cyclophosphamide)
•AC (doxorubicin and cyclophosphamide)
•TAC (docetaxel, doxorubicin, and cyclophosphamide)
•AC followed by T (doxorubicin and cyclophosphamide, followed by paclitaxel)
•TC (docetaxel and cyclophosphamide)
Because it is unknown if metaplastic carcinoma of the breast behaves like the typical infiltrating ductal or lobular cancer (which make up approximately 95% of breast cancers), some doctors will administer slightly different chemotherapy, such as cisplatin (Platinol)-based chemotherapy, usually with 5-FU.
Paclitaxel, docetaxel, and carboplatin (Paraplat, Paraplatin) may be given after standard adjuvant chemotherapy.
In addition to the drugs and combinations of drugs listed above, the following additional drugs may be used to treat recurrent or metastatic breast cancer, either individually or in combination:
•Vinorelbine (Navelbine)
•Capecitabine (Xeloda)
•Protein bound paclitaxel (Abraxane)
•Pegylated liposomal doxorubicin (DOXIL, Dox-SL, Evacet, LipoDox)
•Gemcitabine (Gemzar)
•Ixabepilone (Ixempra)
Bevacizumab (Avastin), a blood vessel blocking drug (called anti-angiogenic), is another targeted therapy that has been used in combination with chemotherapy for the treatment of metastatic breast cancer. (See the Targeted Therapy section below.)
The side effects of chemotherapy depend on the individual and the drug and the dose used, but can include fatigue, hair loss, risk of infection, nausea and vomiting, loss of appetite, and diarrhoea. These side effects usually go away once treatment is finished. Rarely, long-term side effects may occur, such as heart damage, nerve damage, or secondary cancers, but studies have shown that these side effects do not shorten a woman's survival time.Targeted therapy
Targeted therapy is a treatment that targets specific genes, proteins, or the tissue environment that contributes to cancer growth and survival.
Anti-angiogenic targeted therapy (blood vessel blocking therapy)
Bevacizumab has been used to treat metastatic or recurrent breast cancer (see below) for many years. This drug blocks angiogenesis (the formation of new blood vessels), which is needed for tumor growth and metastasis. Because bevacizumab may not work well for all tumors, it is no longer approved by the FDA as a treatment for breast cancer. However, it is still used as a treatment in Europe. Research on bevacizumab for breast cancer is ongoing. When combined with paclitaxel, bevacizumab appears to shrink the tumor and keep it smaller for a longer time in women whose breast cancer has spread compared with paclitaxel alone. Recent studies have shown a benefit of adding bevacizumab to other chemotherapy as well.
Learn more about targeted treatments.
Anti-osteoclast targeted therapy (drugs that block bone destruction)
•Bisphosphonates are a class of drugs that block the cells that cause bone destruction (osteoclasts). Bisphosphonates are commonly used in relatively low doses to prevent and treat osteoporosis. In patients with breast cancer that has spread to bone, higher doses of bisphosphonates have been shown to reduce the complications of cancer in the bone, including bone fractures and pain. Pamidronate (Aredia) and zoledronic acid (Zometa) are two intravenous bisphosphonates used to treat breast cancer bone metastasis. Recent studies have suggested that these drugs may also be able to reduce breast cancer recurrences when given in the adjuvant setting, although more data are needed.
•Denosumab (Prolia) is in another new class of osteoclast-targeted therapies called RANK ligand inhibitors. Although not yet approved for patients with breast cancer, recent studies have shown great promise of these drugs in treating breast cancer bone metastases and osteoporosis.
Learn more about bisphosphonates for breast cancer.
Recurrent and metastatic breast cancer
Breast cancer is called recurrent if the cancer has come back after it was first diagnosed and treated. It may come back in the breast (a local recurrence); in the chest wall (a regional recurrence); or in another part of the body, including distant organs such as the lungs, liver, and bones. A local recurrence is frequently considered curable with further treatment. A metastatic (distant) recurrence is generally considered incurable, but is frequently treatable. Some patients live years after a metastatic recurrence of breast cancer. The goal of treatment for advanced disease is to prolong survival and/or improve quality of life.
Generally, a recurrence is detected when a person has symptoms. These symptoms depend on the site of the recurrence and may include:
•A lump under the arm or along the chest wall
•Bone pain or fractures, which may signal bone metastases
•Headaches or seizures, which may signal brain metastases
•Chronic coughing or trouble breathing, which may signal lung metastases
•Abdominal pain or jaundice (yellow skin and eyes), which may be associated with liver metastases
Other symptoms may be related to the location of metastasis and may include changes in vision, changes in energy levels, feeling ill, or extreme fatigue. A biopsy of the recurrent site is often recommended to be certain of the diagnosis and to check for tumor characteristics that might have changed from the time of the original diagnosis.
The treatment of metastatic or recurrent breast cancer depends on the previous treatment(s), the time since the original diagnosis, and the characteristics of the tumor.
•For women with a local recurrence within the breast after initial treatment with lumpectomy and adjuvant radiation therapy, the treatment is mastectomy. This usually results in cure.
•For women with a local or regional recurrence of the chest wall after an initial mastectomy, resection (surgical removal of the recurrence) followed by radiation therapy to the chest wall and lymph nodes is the treatment, unless radiation therapy has already been given (radiation therapy cannot usually be given at full dose to the same area more than once).
•Total-body therapies such as chemotherapy and targeted therapies are generally the primary treatment in recurrent metastatic cancer. Radiation therapy and surgery may be used in certain situations for women with a distant metastatic recurrence. Often radiation is used to treat painful bone metastases.Best wishes
Sylvia0 -
Hello BernieEllen
Thank you for your post. The jokes always make me laugh.Best wishes
Sylvia xxxx0 -
Hello linali (Lindsay)
I was glad to know that you had a good trip to the US. You will be able to cherish the memories.I was very sorry to hear that your brother-in-law had been taken into a hospice. I think this is probably a good place to be when there is nothing else that can be done. I think it is far better than being in hospital. I know lots of people want to die in their own home, but, even with care, I think it can result in a difficult death. This is my own opinion of course, but I think it is the choice I would make for myself.
I saw one of my brothers die very peacefully in a hospice in York, in North Yorkshire , and I saw the very good care that he received during the three weeks that he was there, three weeks that were to be his last weeks. I was with him a lot of the time and I really appreciated the peace of the place, the dedicated but cheerful staff, their kindness and compassion, and the way they treated me, not to mention my brother. The family were with him as he died peacefully one Saturday afternoon, and apparently free of pain.
I was so sorry to hear that the injections for your pain did not work and I hope more injections will prove more successful. Have you had a diagnosis of what this pain is? Where on your body are you having your injections? Is it related to your breast cancer treatment or is it arthritis or fibromyalgia? People in cold wet climates seem to have a lot of aches and pains in the joints. I think of old we used to call it rheumatism.
I do hope all will go well when you go to the lymphoedema clinic on Wednesday October 17th. If it were me, I would try to resolve the lymphoedema around the top of the arm in my own way. Remember what I said about lymphoedema in past threads. Swelling, especially in the arm, is common after breast cancer surgery, but it does go away and you are considered only to need sessions at the clinic according to a certain measurement that the lymphoedema nurse ascertains on your first visit. If it is over a certain amount you will probably attend the clinic for a few appointments. If not, you will be given exercises to do. You may also be given a sleeve. My own opinion is to try to do without a sleeve, as I think it does more harm than good. It is better to do the exercises and the manual massage to keep the lymph moving. I did mention about the detoxing brush that you can buy at the pharmacy or do the gentle massage with your hand that the nurse should show you how to do.
Again, if it were me, I would not want to wear a compression bra, especially as it is made of nylon. Anything that is made of nylon, polyester etc. is not comfortable or healthy against the skin. Like you, I wear bras that are mainly made of cotton. With the skin condition that you have on the breast, I would steer clear of man-made fibres.
We have had the new research into TNs and others discussed on the thread and the forum, but of course we have to remember this is all for the future, and we are in the here and now. We hear so much about new discoveries, new trials, more faulty genes and so on, but for the moment we have surgery, chemotherapy and radiotherapy.
I shall be very interested to know what your oncologist has to say about TNBC and what we have been told lately about the cells of TNBC being more akin to those of ovarian cancer and lung cancer. As far as I know, there is not a preventive test for ovarian cancer, although I may be wrong.
I am becoming somewhat concerned now about all the information that is flying around. From reading some of the other threads I am getting the feeling that the more information we get the more anxiety levels increase. I am concerned about women thinking about having their ovaries removed or even complete hysterectomies in the light of this latest information. We need to remember that no surgery is without risk. I try to stay calm. I have read that women who have not had children are at risk of ovarian cancer. This applies to me, but I am not going to rush into any kind of surgery.
We have had all this information about taking metformin as a preventive, or taking low dose aspirin. I think we have to be very careful about rushing into any of this, and remember that all drugs have undesirable side effects.
I am very concerned that people who need invalidity benefits are having their appeals turned down. It looks as though it is the same in Ireland as in the UK. What political party do you have in government in Ireland? Here in the UK we have what I call the nasty party. It is dishing out ladlefuls of nasty medicine to the most vulnerable but is not swallowing any of it itself! We are going backwards. It is alright for those who, in this country, have muchos spondulicks, but not for the rest of us. We are not all in this together LOL! All this cutting is going to backfire in the end. One of my cousins was at the hospital recently for her COPD and everyone was being given discharge forms!!!
Take care and be sure to let us know how you get on and how your visiting oncologist responds to questions.
A good question might be to ask why we do not have regular blood tests to check for tumour markers. I understand the normal is 38, so if you have an abnormal number would this not show that something is going wrong? What about scans? How are we really to know what is going on inside our bodies in between these physical examinations?
Fond thoughts
Sylvia xxxx0 -
Hello everyone
I thought you might like to know that Dulcie is having a bad time and might like to know that she is in your thoughts. This thread is about explaining your own ups and downs with breast cancer, but it is also about comforting others. I am sure she would love to hear from you.I was wondering whether you feel that there are too many threads being created and whether you find the magnitude of the forum confusing? I was reading a post where someone was saying this. I wonder how a newly diagnosed TNBC feels when they go to the TN forum and find there are 48 pages with 1415 topics? To me this is mind-boggling! With all this, only the first page is active and only a few threads on that page are active. Surely this needs to be simplified?
I am just going to concentrate on this thread, but do invite anyone with breast cancer to post and will stop posting on other threads, as it is too confusing and time consuming. Above all I want this thread to be meaningful, informative, helpful and compassionate.
Special hellos to Dulcie, BernieEllen, linali, Mumtobe, FernMF, sam52, chatterbox2, Iz_Lys_Mum, BuddhaWolf, LintRollerDerby (Betty), beachmd, stupidboob and inspiredbydolce.
Good luck on Monday to bak94 and hello to christina124 and mccrimmon324 and not forgetting Maria_Malta.
That is all for today. Have a good weekend. I forgot to say that yesterday I went for my regular check up at the Royal Devon and Exeter Hospital with my breast cancer consultant surgeon and was told that all is OK. I also found out that with the consultant you are usually discharged five years after diagnosis, so I might get discharged. With the oncologist the usual time is ten years. I have an appointment in April 2013 by which time, with luck, I shall be approaching eight years. For the moment it is seven years, three months and twenty-three days, but still not taking anything for granted.
Best wishes
Sylvia xxxx0 -
Checking in before getting down to preparing a few curries for tomorrow, for a farewell lunch for my eldest daughter and her boyfriend who are leaving for Sri Lanka and then Australia on Tuesday. My sister and her family, and a couple of other family friends are coming to say goodbye, so I have a lot of preparations...
A week ago I had my onc checkup (so far so good), and yesterday was the anniversary of my operation...I can hardly believe that it's been a whole year, and I'm lucky to have come out of treatment with next to no ill effects...the only one being slight tingling in my left toes (from Taxotere I think), but that is now almost unnoticeable.. Next thing is a mammogram and an ultrasound in January, as although I did have a bmx, the fat was left behind to 'create' two phony breasts and my onc thinks I might as well have a mammogram even though there is probably (hopefully) nothing to see! I'll be seen by him again in 6 months time, but no longer need to see my bs apparently. Sylvia, you were asking about blood tests and markers above, and like UK, these are not taken here as part of routine checkups, but only used as a tool to observe the behaviour of an existing cancer in ongoing treatment. I think the docs here (many of whom specialise in the UK), believe that the odd marker every 6 or 12 months does not give any real indication of anything. This makes sense to me, actually...
Don't have much time to write, but I do come in to read posts about once a week. I wish all of you undergoing treatment, or having to deal with complications, very best wishes and healing thoughts..
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Hello MariaMalta,
It was so lovely to hear from as I shall always think of you as an important part of our group.
I do hope all will go well with that farewell party tomorrow.
Congratulations on your anniverary. How time flies by.I was glad to know that all was well with you. Keep it up.
Thank you for the information about the blood markers. With all the information and tests that our American friends have we start to think we are missing out.
Yesterday at my check up they even ran out of capes and I had to wrap myself in a sheet. I laughed it off and said it was good practice for Halloween!
Did you read the Hitchens book? I found it very moving.
Fond wishes,
Sylvia.xxx
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Yes Sylvia, I also thought the Hitchens book was very moving, and honest and true. He is so good when describing the tactlessness of friends and acquaintances and I found myself nodding my head in agreement.
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Hello BernieEllen
This morning on BBC Radio 4 not long before 9 am I switched on the radio and heard a woman speaking in an Irish accent about what was going on in Ireland. It was profound and hilariously funny at the same time. I am sure you would appreciate listening to it. I was going to post the words but it is only available to listen to. It starts off about now being governed by the IMF. Please listen and tell me what you think. I thought it could have been you saying it all! I do not really know whether you have an Irish accent, since you said your first ten years were spent in Hertfordshire.http://downloads.bbc.co.uk/podcasts/radio4/today/today_20121013-1200a.mp3
Best wishes
Sylvia xxxx0 -
Hello Maria_Malta
I was so glad to know that you had read the Hitchens book. I agree with what he said about the tactlessness of friends and acquaintances. It is a pity that we do not have more thinking people in this world.I have just noticed the words at the bottom of your post about life is not orderly. It is definitely chaotic and you never know what a new day will bring or whether there will be a new day!
Best wishes
Sylvia xxxx0 -
Hi Mumtobe
I asked my step son Alex, who among many things is a vegan. He said the best web site for Tofu recipe's post Punk Kitchen. http://www.theppk.com/
I have a feeling that Lidl sells Tofu.
Michael
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